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The Redefinition of ASD – a Collective Outlook

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The Redefinition of ASD – a Collective Outlook International Journal of Technology and Inclusive Education (IJTIE), Volume 7, Issue 2, December 2018 The Redefinition of ASD – A Collective Outlook Sandra Patrícia Pereira, Tereza Ventura KIE: Knowledge, Innovation and Education, Portugal Abstract This article is the second of a series of reflective facing unpredictability and excessive sensory stimuli. reports on a work in progress that aims to measure the After the diagnosis, the family worked out their beliefs, transformative impact of a child with Autism Spectrum developed their resilience and took on the responsibility Disorder within his/her intervention nucleus in a of defining an intervention program that would allow bidirectional logic of personal and social learning and only their child to be the only one to set the limit of his development. The family is studied as a mobilizing agent development [1]. of the community for the definition of a common project They adopted the Son-Rise Program (SRP) as their in which everyone will be subject and object of method of intervention, having as a structural pillar the transformation and learning. The problem is deepened, resorting to elements of the community, in a volunteer moving from the family domain to the volunteer’s social way, as mediators and promoters of learning and context. The program is described and how it prepares development. They selected, recruited and taught and monitors learning and practices. A qualitative volunteered to give life to a community governed by the methodology was adopted, using semi-structured common goal of optimizing the child's zone of proximal interviews and focus groups, trying to understand how development. They nurtured the team spirit and used their the love for a different child allowed preparing an action skills and tools to work the group's cultural, emotional plan in which shared responsibility, belonging and unity and social intelligence, contributing to the dual purpose gave birth to a new idea of a learning community - the of teaching and learning. Son-Rise family. Collectively, they affirmed themselves as a space of exchanges and social interactions that can awake the 1. Introduction potential development of all the participants. They believed in the power of sharing and cooperation, valuing This communication follows a preliminary article democratic dialogue and inclusion, promoting feelings of attempting to verify the transformative impact of a child shared responsibility, belonging and unity that gave birth with Autism Spectrum Disorder within his/her to a new idea of learning community - the Son-Rise intervention nucleus (18 members, between 37 months family. and 42 years old), thinking about education as a They inspired other families who showed interest in the multilateral process in a learning community. It aims to method and curiosity for the complicity and synergy understand this nucleus (parents, child, fourteen created around that team. Several parents of children with volunteers) as an ecosystem based on the egalitarian ASD sought help in this learning community and the dialogue concept, studying interactionist practices, based information and knowledge were widely shared. This on the collective belief that a systemic evolution contagion has been rampant and other Son-Rise Families necessarily results from the capacity for individual have emerged, creating an informal alliance in which transformation, in a dynamic of mutual influence. together they promote and motivate themselves. The child in question will be named G, 34 months old, It is important to point out that this development of male and diagnosed with an autism spectrum disorder. In collective potential has occurred without planning and in the initial diagnosis, he presented a great impairment in an unpretentious way, as a natural result of the socio- all areas evaluated, denoting a lack of consistency in interactional exchanges promoted by the method itself, by visual contact, inexistence of verbal and non-verbal the learning derived from reflection and by the respect communication, and a null period of interactive attention. and profound gratitude of this family towards those who, He showed lack of facial expression, as well as restrictive in an altruistic manner, still unaware of the transforming interests and exclusive and repetitive movements. His power of a different child, accepted to participate and condition seemed aggravated by widespread hypotonia, change for the sake of love. which inhibited motor development; by an avoidant Reflecting on the power of resilience and the role of eating disorder, associated with the oral hypersensitivity these new learning communities in society, promoting the that he manifested and the irritable bowel syndrome he democratization of lifelong learning and development are suffered from. He is methodical and reveals discomfort aspects to consider in the context of an inclusive, Copyright © 2018, Infonomics Society 1276 International Journal of Technology and Inclusive Education (IJTIE), Volume 7, Issue 2, December 2018 cooperative, shared and participated citizenship that relationships, integrated in other subsystems, with which longs for a society of everyone and for everyone. it develops, influencing and being influenced internally and externally in an ongoing process of development. 2. Autism Spectrum Disorder Thus, and after reviewing the reference literature, the diagnosis of ASD seems to present distinct, yet The American Psychiatric Association [2] presents penetrating and bidirectional, influences throughout the autism as a complex neurodevelopment disorder that family, being necessary adjustments in the economic, manifests itself with great variability in the intensity and social, recreational, domestic, affective, educational in the form of symptomatology. Taking into account this aspects, as well as in the family identity. An effective and variability, the denomination Autism Spectrum Disorders immediate multidisciplinary follow-up of the family is (ASD) was adopted, allowing a single categorization of fundamental, capable of welcoming the diagnosis and a the continuous diagnosis, adapted to each individual faster passage through the various phases of mourning, through the associated specifiers and deficits that best promoting reorganization, emotional adjustment and represent the heterogeneity of the behavioral phenotype family health. Despite the quality of the follow-up, the of that individual. process of acceptance is time-consuming since there is a This spectrum is portrayed as a behavioral and need to mourn the idealized baby. The family needs to relational dysfunction that concomitantly presents appeal to their emotional fertility, letting the real child be persistent impairment in social communication and reborn in their imaginary, idealizing him and accepting restricted, repetitive and stereotyped patterns of behavior, him no matter the limitation or difference. interests or activities [2, 3]. Based on the perceptions of This capacity for reorganization and acceptance is the studied family in this article and the method of significantly correlated with the resilience of each family, intervention adopted by them, it is assumed, however, that is, with the capacity of self-regeneration, not that autism, although having behavioral manifestations, allowing them to be destroyed by adversity, trying out is, in fact, a socio-relational disorder [4]. strategies capable of overcoming challenges and Etiology is assumed to be multifactorial, involving promoting growth in critical moments. The literature genetic, neurological and environmental causes. points out that factors such as knowledge about the child's The first clinical manifestations usually occur before problem and the most effective strategies of action; a 36 months of age, completing the diagnosis between the stable socio-economic level; the social support; a ages of 3 and 4 years, when the child is perfectly inserted structured and supportive family environment, permeated in a social context where the expression of the by commitment and flexibility; high levels of symptomatology is more evident. communication and interaction; internal and external According to the data from the Center for Disease coping strategies; a positive outlook on life; and a family Control [5], the prevalence of the disease is 1/68, reaching belief system are agents that promote the resilience of 1.47% of the world’s population, being four times more families of children with ASD. frequent in males. A positive adaptation, permeated by optimism and Given the aforementioned difficulty in defining acceptance, seems, as described in the literature, capable etiology, several intervention models/programs are used. of promoting feelings of hope and control, fundamental In this article, the SRP method is essentially approached, to determine the quality of the parental relationship, the since it was the one that was chosen by the studied family, precocity of the intervention, as well as the family which best corresponded to their beliefs and expectations involvement in this process. of the intervention. Currently, a paradigm change regarding the role of the family in children with ASD has been evidenced, starting to occupy a prominent place in the most varied models of 3. Family intervention, particularly in the parents. It seems to be understood that parents are one of the best resources of Assuming ASD as a socio-relational dysfunction, the the children, both for their knowledge and for the family takes on a particular
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